Quick Bactrim question

[mmthomm]

Hi all,

I'm a newly diagnosed (6 weeks ago) Wegener's patient so I'm on Methotrexate and I've just completed 4 weeks of RTX infusions and am very happily tapering down on my prednisone - down to 30 mg/day already so hoping sleep will return soon. :-) At any rate, I'm also taking Bactrim as a prophylaxis and I'm seeing a lot of mixed information about there about whether people continue to take the antibiotic for the long haul as a prophylaxis even if remission has been achieved or whether it's just something you take while the disease is active. I know that it's a conversation for my rheumatologist but just curious what other people's experiences have been since the research is sort of all over the place on this one. If taken on a "permanent" basis I'd also like input on whether anyone has had side effects (GI, etc.) as a result of long-term use of an antibiotic.

Thanks!
Maureen

[drz]

As long as you are on any meds to suppress your immune system, Bactrim or some drug to try prevent PCP is a good idea. Many people take it or some other drug for years since PCP is very bad thing to experience.

[annekat]

I have also read on here and elsewhere that Bactrim taken on a long term basis, perhaps indefinitely, actually may help to keep one in remission. I don't remember an explanation of why that would be so, however. Maybe someone knows something more about this.

[pberggren1]

I used to take Bactrim because I was high risk with my severe lung damage at getting deadly lung infections. I almost died from Mycobacterium Abscessus Lund Disease. I stopped taking the Bactrim because it was causing interstitial nephritis. I stopped it back in 2011 I think.

Maureen, if you are not at high risk you can probably go off the Bactrim fairly soon I would think. But I would get some info out of your doc why they want you to stay on it before making the decision to go off. Do you have a skilled Vasculitic doctor?

[Alysia]

I used to take Bactrim untill it elevated my liver functions. but being on mtx can be a contra indication to taking Bactrim because it can elevate toxicity of mtx. there is a thread about it.

[annekat]

I used to take Bactrim untill it elevated my liver functions. but being on mtx can be a contra indication to taking Bactrim because it can elevate toxicity of mtx. there is a thread about it. This is true, but apparently it isn't always a problem, it just needs to be watched in the bloodwork or something. I'm not clear on what they look for. But my doc thinks I can take the Bactrim despite being on MTX, and he convinced my drug plan that it was OK to cover both at the same time. I also had a conversation with Sangye about this and she agreed it was OK, that the risk was not that great, and that the benefits outweighed it, FWIW.

[carriej22]

As someone who has had a lung infection - take the bactrim.

I still take it everyday; as last time was not something I ever want to repeat. Doctors were throwing everything at me because I couldn't breathe and ended up on a ventilator. There is nothings as scary as not being able to get a breath.

I never had any issues with mine in my liver functions... I take the generic brand and it is dirt cheap too.

[norcalian]

I'm allergic to Bactrim, so I take Mepron - which is gross. I have been taking it for more than a couple of years. I have an infectious disease specialist I talk about this sort of stuff with. I got off of Prednison and Imuran and I do RTX treatments every 4 - 6 months to maintain remission...however my ID Doc doesn't seem too interested in taking me off of Mepron. However, I had PCP and spent a log time in the hospital because of it. So that is probably why no one is moving to fast to get me off of it.

I have also heard that Bactrim can help maintain remission. My understanding is that it may have something to do with the thought that sinus infections can possibly trigger flares...and since Bactrim keeps those sort of infections at bay, it mitigates those sort of flares. However, it applies more to those with Wegeners from the neck up...at least that was my very basic understanding - anyone else hear something along those lines?

[annekat]

I have also heard that Bactrim can help maintain remission. My understanding is that it may have something to do with the thought that sinus infections can possibly trigger flares...and since Bactrim keeps those sort of infections at bay, it mitigates those sort of flares. However, it applies more to those with Wegeners from the neck up...at least that was my very basic understanding - anyone else hear something along those lines? Thanks for that possible explanation. Makes sense. But I wonder why Bactrim as opposed to any other antibiotic? I know infections can become resistant to specific antibiotics over time. Seems like Bactrim DS, the kind taken 3x per week, is somehow designed for long term use. I'd like to hear any other insights on this, too.

[carriej22]

From what I understand (and I could be wrong) the DS means double strength, and some people take those every second day; but the regular one (which I have) is a lot cheaper and half the strength and is taken daily - it's easier on the tummy than the DS since it's half the drug dose, but you take it more often.

My Doctor told me it's the go-to med for keeping away the baddies (specifcally, pneumocystis-type pneumonia) and that as an added bonus it might help keep me in remission.

[annekat]

I did take the regular Bactrim, not the DS, for sinus infections, back before anyone knew I had Wegs. It worked as well as anything, but my ENT did often change the antibiotic from one time to the next, I guess because of the resistance issue. Of course, at that time I wasn't immunosuppressed by meds and didn't have that reason to be susceptible to PCP. At this point, I'm happy to take the Bactrim, in whatever form, indefinitely, if it is considered the best for my situation and might prolong remission. The DS doesn't seem to upset my stomach, but I'm curious if anyone knows why that is usually what is prescribed, with the 3x/wk routine.

[Lilly]

Hi Maureen, thank u for sharing. It seems like ur doctors are doing things for u as a newly diagnosed pt, that my doctors are doing for me now. I was diagnosed in 1990, I was 25, and instead of rituxan, they used cytoxan. It made some of my hair fall out, and also damaged my ovaries, so I could not have children, and I went thru menopause at 26 yrs old! Lol! Then, since it was considered "rare" the bactrim idea, was being researched. So my dr felt that it couldn't hurt, and may help my lungs from getting infections, and honestly, that's all he told me. So I have been on bactrim DS for 23 years. Any time I asked if I should stop, he always said no. So I take it every day. I have had different GI problems along the way, but my wegeners is mainly in my sinus, throat, lungs....all mi GI problems have been attributed to the dz. I've had acid reflux. My voice is a bit deeper, I have throat lesions that make me hoarse, especially in the evenings. But I'm still on Bactrim DS! If u have any specific questions for me....just ask! Best of luck! We r all here for u!

[marta]

I'm allergic to Bactrim, so I take Mepron - which is gross. I have been taking it for more than a couple of years. I have an infectious disease specialist I talk about this sort of stuff with. I got off of Prednison and Imuran and I do RTX treatments every 4 - 6 months to maintain remission...however my ID Doc doesn't seem too interested in taking me off of Mepron. However, I had PCP and spent a log time in the hospital because of it. So that is probably why no one is moving to fast to get me off of it.

I have also heard that Bactrim can help maintain remission. My understanding is that it may have something to do with the thought that sinus infections can possibly trigger flares...and since Bactrim keeps those sort of infections at bay, it mitigates those sort of flares. However, it applies more to those with Wegeners from the neck up...at least that was my very basic understanding - anyone else hear something along those lines?

I am also allergic to Bactrim and even though there is a protocol that can desensitize you to the allergy, my doc wasn't interested in doing that... I take Dapsone, a antibacterial commonly used to treat Leprosy, but is one of the three options to prevent PCP. My understanding is that Bactrim for whatever reason is best for WG with sinus involvement, I also hear that Mepron sucks, but Dapsone has given me no problems, I take it daily with my drugs (I'm on Imuran, and thankful for that as I also hear MTX kinda sucks too.) Just something that you might want to ask your doc and change up the Mepron....

To reply to the thread, I have been taking it (Dapson) since the getgo because I too am not interested in dealing with PCP. This is the nasty that often kills people with HIV because in an immune depressed environment it is very difficult to stop.... I (and all of you) are sportin' that exact environment that can give that bacteria a very good chance to survive and wreak havoc. Just my opinion.

[me2]

As far as I know there has not been a study of Dapsone related to wg. Of course your doctor is using the logic that treating PCP with Dapsone is the same as using Bactrim. It might be. But one thing this illness has taught me is to rely on studies when I can and to be leery of logic. It often defies logic. I don't understand why your doctor would 'not be interested' in a desensitizing protocol that would give you the well studied drug Bactrim to have in your weggie defense tool box. Lazy? I dunno
The protocol is inexpensive, easy, safe and takes only a couple of weeks to find out if you will be successful in taking Bactrim. Bactrim is cheap and well tolerated by most. It has a very high success rate. I don't see why someone wouldn't be interested in adding such a proven tool to your treatment. Just my opinion too. ha

Way back in the dark ages of WG treatment I found out about Bactrim from the person who discovered its utility - Dr DeRamee. This was before any studies had been done.
I met him at one of the Vasculitus conferences many years ago. Even he did not know about the desensitization protocol at that time. I came home and found it through research on my own. I took it to my doctor, who had never heard of it, and went through it. I can now take bactrim no problem. Its a good tool to have.

[marta]

The not going through the desensitization was more my decision than the docs. I did talk to them about it when you first mentioned the protocol to me a few years ago, but we made a decision together.

I live in a town with a Health Clinic instead of a hospital. It use to be a hospital but we don't have an anesthesiologist here so they can't do any procedures that might turn south and require surgery. The closest hospital with anesthesiologist is about an hour drive through the mountains. My main doc is 4 hours drive in a real real hospital. If I went through the process, I wouldn't do it here or in Hinton, I'd feel most comfortable doing it in a real real hospital in Edmonton, and that would mean I'd have to mess around with Hana's schooling, Brian's work life and my life and the Dapsone has caused me no problem whatsoever thus far. I know that there are benefits to taking Bactrim with WG, but it almost killed me once in my 20's, so as I'm sure you can imagine, I have a bit of an aversion to it... I had been taking it for a while back then too, so I don't trust that once desensitized, I might not go through the same experience. The stress of it in the back of my mind would probably be more trouble in the big picture than going through that disruptive process just for a benefit whose workings nobody really understands anyway.

There are some other Dapsone benefits that can be specific to WG that allowed my doc to be so agreeable: dapsone is an anti-inflammatory agent and not a steroid, it does not fit the usual definition of an NSAID. By definition, NSAIDs block cyclo-oxygenase as their primary mechanism of action, which dapsone does not do. Also, Myeloperoxidase inhibition (Dapsone's function) has also been suggested as a neuron-sparing mechanism for reducing inflammation in neurodegenerative diseases such as Alzheimer's disease and stroke, might even help some of the neural damage that is associated with WG. Dapsone only appears in the treatment protocols for PCP only when the patient is allergic to the sulpha based meds because of the different mechanism that it eliminates the disease.

I don't pay for my meds, so cost is not an issue, although I'm pretty sure that the price difference isn't that great.

So these are all decisions made by 'moi' and supported by my doctor, who is anything but lazy... She went and fought for us Weggies to be able to get RTX financial support from the Government of Alberta, something no other doctor I know has done for their Weggie patients and surely setting a good precedent for us all. She's a mom of two young boys and gives everyone of her patients more time than you'd get with a GP (unlike any specialist I have ever seen) - I've had appointments with her for over an hour. I also saw how much she charges for each visit and it blew my mind how little it is. She's doing it because she cares, not to make a bunch of money. I trust her with my life.

This is just my experience, and I thought I'd share it with people on Moprin for an alternative IF they don't want to go through the desensitization protocol for Bactrim.

I too am continuing to take Dapsone indefinitely. I take a probiotic at night to keep the gut flora at a relatively healthy level and offset the daily antibiotic.

[me2]

You said your doc wasn't interested and that is all I had to go on. It sounded like it was your docs decision. Now that you explain your history I completely understand why you are doing it the way you are. I only insulted your doctor based on the information you gave. It sounds like you have a real treasure there. I won't insult her again. ha

Thanks for sharing the rest of the story.

[marta]

You said your doc wasn't interested and that is all I had to go on. It sounded like it was your docs decision. Now that you explain your history I completely understand why you are doing it the way you are. I only insulted your doctor based on the information you gave. It sounds like you have a real treasure there. I won't insult her again. ha

Thanks for sharing the rest of the story.

Ha ha... I tend to overspeak, and then try and fix my overly verbose problem so I end up missing important stuff.
Sorry..... if I actually wrote everything I think as I type, Andrew would run out of space on the server in no time flat.

This is why I tend to stay off, because I just have so much to say I'd be here 24/7 filling up page after page of my nonsensical brainwaves,

Happy New Year to all.

[pberggren1]

My doc also had to fight a bit to get the RTX approved in Saskatchewan. I was also the first to get it in Saskatchewan.

[mmthomm]

Well...just saw the the rheumatologist yesterday and his plan is take me off Bactrim once I'm below 10mg of prednisone (should happen by middle to end of February) because he didn't feel that the Bactrim would have any significant effect on maintaining remission particularly because I'm going to stay on weekly methotrexate and repeat infusions of RTX every 6 months...I can't wait to be off prednisone...ironically if all goes well, I'll finish taking it 5 days shy of one year when I initially began taking it for what they thought was sero-negative rheumatoid arthritis...

[drz]

As far as I know there has not been a study of Dapsone related to wg. Of course your doctor is using the logic that treating PCP with Dapsone is the same as using Bactrim. It might be. But one thing this illness has taught me is to rely on studies when I can and to be leery of logic. It often defies logic. I don't understand why your doctor would 'not be interested' in a desensitizing protocol that would give you the well studied drug Bactrim to have in your weggie defense tool box. Lazy? I dunno
The protocol is inexpensive, easy, safe and takes only a couple of weeks to find out if you will be successful in taking Bactrim. Bactrim is cheap and well tolerated by most. It has a very high success rate. I don't see why someone wouldn't be interested in adding such a proven tool to your treatment. Just my opinion too. ha

Way back in the dark ages of WG treatment I found out about Bactrim from the person who discovered its utility - Dr DeRamee. This was before any studies had been done.
I met him at one of the Vasculitus conferences many years ago. Even he did not know about the desensitization protocol at that time. I came home and found it through research on my own. I took it to my doctor, who had never heard of it, and went through it. I can now take bactrim no problem. Its a good tool to have.

I tried the desensitization protocol. It would have taken three weeks to complete it but the doctors called it off on day two due to the reaction I was having to two drops of the suspension in a glass of water. A normal dosage would have been 20 drops I believe. I was doing it at the clinic in the office of a doctor who treated allergies. You need to have access to epinephrine in case of any serious reactions when trying any desensitization procedure. My allergy is due to the sulfa part since I take the other part of Bactrim which is trimethoprim without any problem. Bactrim though is 5 parts of sulfamethoxazole to one part of trimethoprim.

Dapasone caused a blood anomaly for me. I had anemia at the time and it was unclear if the Dapasone contributed to it of if the broken blood cells from Dapasone happened because of the anemia. Anemia is one of the contraindications to Dapasone I had along with diabetes and allergy to Sulfa drugs. People on MTX may also have problems with it.

[Alysia]

I must add the people with G6PD deficiency also are not allowed to take Bactrim/ sulfa. it can cause them jaundice. I know it because my dad and my 2 sons have it. I wonder if it exists at other countries since it is genetic and spread only in specific comminities...
Glucose-6-phosphate dehydrogenase deficiency - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Glucose-6-phosphate_dehydrogenase_deficiency)

[Auntie TooToo]

My ID Doc has put me on Bactrim DS indefinitely as a prophylaxis after my last hospital stay in December 2013. As I have already been dealing with a fungal infection in my lungs, he felt that it was necessary to prevent PCP strain due to Wegeners. Since starting med upon discharge, I have suffered with increased gastro problems such as nausea & diarrhea; as well as a horrible taste in my mouth {related ?}. Most of the time I don't even want to eat! I understand the necessity of taking the antibotic, I definitely don't want to catch another lung infection because I'm still being treated for the one; but I'm planning on talking to ID Doc next appt to see if there is something he can do to help with side effects. Hope u have better success than I have. Hang in there ......

[annekat]

Auntie, I don't think I get a bad taste from the Bactrim. I think I get one from Methotrexate, though sometimes I notice it more than others. But we are all different, and perhaps Bactrim is indeed causing yours. I also have not connected any gastro problems to the Bactrim. But antibiotics have been known to do that. Those symptoms come and go for me, so it is hard to pin down a cause.

[Dirty Don]

Haven't read the entire entry, but perhaps you have a 'sulfa allergy'? Many on Bactrim have to go off it cuz of the sulfa allergy.

[MikeG-2012]

Haven't read the entire entry, but perhaps you have a 'sulfa allergy'? Many on Bactrim have to go off it cuz of the sulfa allergy.

One of those people would be me Don! Allergic to it long before diagnosis though. I'm also allergic to penicillin. Makes for interesting and expensive antibiotic options.

[drz]

Haven't read the entire entry, but perhaps you have a 'sulfa allergy'? Many on Bactrim have to go off it cuz of the sulfa allergy.
I could NOT take it for this reason and also had reactions when i tried to desensitize myself to sulfa so they stopped the attempt.

[windchime]

My ID Doc has put me on Bactrim DS indefinitely as a prophylaxis after my last hospital stay in December 2013. As I have already been dealing with a fungal infection in my lungs, he felt that it was necessary to prevent PCP strain due to Wegeners. Since starting med upon discharge, I have suffered with increased gastro problems such as nausea & diarrhea; as well as a horrible taste in my mouth {related ?}. Most of the time I don't even want to eat! I understand the necessity of taking the antibotic, I definitely don't want to catch another lung infection because I'm still being treated for the one; but I'm planning on talking to ID Doc next appt to see if there is something he can do to help with side effects. Hope u have better success than I have. Hang in there ......

Try adding a probiotic that you take at a different time than the Bactrim. It will help alleviate the diarreha.

[annekat]

Try adding a probiotic that you take at a different time than the Bactrim. It will help alleviate the diarreha.
Good idea. Probiotic capsules are not hard to find at places like Super Supplements, health food stores, pharmacies or health sections of regular grocery stores. Some places may have refrigerated concentrated "live" versions which I haven't tried. But eating lots of good quality yogurt and drinking kefir are also good, since they also contain live cultures of probiotic bacteria. I don't have this problem much with Bactrim, but did with some other antibiotics I've taken, and I found these things to help a lot.

[Alysia]

Try adding a probiotic that you take at a different time than the Bactrim. It will help alleviate the diarreha.

I am afraid that we are not allowed to take probiotic. after all, it is germs and our immune system is weak.
I took it once and it caused me aweful diarhea. but this can be because of my colon involvement.

[annekat]

I am afraid that we are not allowed to take probiotic. after all, it is germs and our immune system is weak.
I took it once and it caused me aweful diarhea. but this can be because of my colon involvement. I'm not sure, Alysia.... We have all kinds of bacteria in our bodies all the time. The probiotic bacteria are supposed to be good bacteria and are supposed to aid in digestion. Antibiotics kill the good bacteria as well as the bad. I'm afraid that if you eat cheese, you are eating probiotic bacteria, because they are used to make the cheese. However, this is all off the top of my head. Time to google "probiotics", I guess. And I don't understand anything about your colon involvement so can't comment on that. I'm just so sorry you have it.

[windchime]

Yep probiotics are good bacteria that normally populate the gut. When you take antibiotics they kill the good bacteria which can cause diarrhea and yeast infections. Which is why it is highly recommended that you take a probiotic if you are taking an antibiotic. If yogurt can be tolerated that is also a good source of probiotic. Alysia your colon problems may preclude you from taking the probiotic for some other reason.

[pberggren1]

For most, probiotics are a must. I am sorry Alysia that you cannot take them. Are you able to eat Greek no fat Oikos yogurt?

[annekat]

For most, probiotics are a must. I am sorry Alysia that you cannot take them. Are you able to eat Greek no fat Oikos yogurt? Greek yogurt is the best, although I like the whole milk kind a little better.

[Alysia]

For most, probiotics are a must. I am sorry Alysia that you cannot take them. Are you able to eat Greek no fat Oikos yogurt?
I can't bear yogurts as well. thanks for the caring, Phil, cindy and Anne.
then it seems that probiotics are only MY problem.

[windchime]

Sorry to hear that Alysia. Maybe that is part of your colon problem, can't get it populated with good bacteria. Might be a good question to ask your doc next time you see him. Just a thought.